Search results

Click here to read the full paper on sci-hub

It's the young men, borderline sociopathic and psychopatic, who are attaching themselves to PACE trial criticism. True ME patients are well mannered and don't question researchers who are only trying to help.

Another limitation is the sample size of 50 patients and 50 controls. It feels a bit small for the hundreds of things they're measuring. Women and men have different metabolite profies and the men in the sample are too few to say anything about them. The other metabolomics studies had similar...

There doesn't seem to be any unlocking of the disease here. It seems that every research group is seeing somewhat different metabolite profiles. There seems to be a broad agreement that energy production is affected but the details vary.

The adaptive pacing therapy manual for therapists in the PACE also made a complicated therapy out of the simple idea of pacing. It mentions "homework", "activity and fatigue diaries", "daily and weekly planning", "activity analysis sheets" and so on. Pacing is in my view not clearly defined but...

That pacing involved a therapist and visit to the clinic was an attempt to move it closer to CBT/GET in terms of placebo effect (not the best choice of words but you know what I mean). We have no idea how strong the placebo effect component was in each treatment arm. Ultimately the comparison of...

One of my worst reactions to food appeared to be due to gluten free chocolate cookies. Generally it's the cheap highly processed industrial food that is the most dangerous. I think that the problem might be additives. Or maybe the mast cell theory is correct and histamine is what matters.

Even if the illnesses are distinct entities it would make a lot of sense to cooperate at the science and advocacy level. We're in the same boat, and together we have the numbers to make a difference.

Isaac Marks co-authored this clinical trial of CBT for CFS. Michael Gelder's obituary acknowledged his role in developing CBT for CFS. The Oxford criteria paper acknowledges financial support from Michael Gelder. Both are authors of a paper on electric aversion therapy for "sexual deviants"...

But asking patients to rate their ability to do things isn't as reliable as actually measuring how well they can do things. Because patients are susceptible to wishful thinking or may not like to admit how ill they are. I not surprised that in picture posted earlier, physical function seems to...

It would be called patient conversion therapy. The goal would be to get the patient to stop identifying as chronically ill and disabled person that requires appropriate care. There's this magical thinking that thoughts create (biological) reality. You all know that one of the proponents of gay...

Excellent video.

@Lucibee May I suggest a virology guest post @dave30th?

I doubt that insurance companies would demand that. They would risk handing the patient proof of disability on a silver platter.

It is also important to try and catch PEM and orthostatic intollerance early on in patients with unexplained fatigue because that can prevent unnecessary suffering and may improve the prognosis.

If it gets better with eating it's probably hypoglycemia. Becoming very hungry during these episodes would also indicate hypoglycemia. That hands start shaking is consistent with hypoglycemia too. I second the suggestion to eat small frequent balanced meals and to avoid consuming sugars alone...

There are good reasons to think that many of the patients the CBT/GET proponents are working with do experience PEM. This is apparent from the CBT/GET proponents having written much about "setbacks" and "boom and bust behaviour". In my eyes these refer to PEM. The patients they are working with...

The diagnostic criteria probably do matter in the sense that patients who are less impaired are more easily manipulated into reporting improved health. That doesn't mean they never had ME or CFS to begin with or that they are genuinely improving. In case it is not clear, I fully agree with the...

My message to NICE on this topic would be something along these lines: The exact reliability criteria (as I call them here) would be determined by Science for ME. They would not be controversial or innovative, but mostly what is done in other areas of research, with a few ME specific...

I think it would be hard to make misleading claims if treatments had to demonstrate an increase in activity levels that is sustained for 8 months, with daily step count measurements taken for 1-2 weeks every 1-2 months, or an abnormal pre-treatment 2 day CPET that becomes more normal (possibly...